ALS Facebook Groups

Facebook Groups

Bryan “BWayne” Galentine was an incredibly compassionate and loving person. Throughout his experience with ALS, BWayne radiated positivity and warmth. He was driven to ensure that every person impacted by this disease were aware of the community support available to them. We honor and remember him through this resource increasing transparency of the social media communities available to support those impacted by ALS.

The ALS community is filled with spaces, both physical and virtual, set up to support you as you navigate being impacted by ALS, including Facebook groups. Facebook groups can be overwhelming. We have created this resource to help you explore which groups may be a good fit for you as a person living with ALS, a caregiver to someone with ALS or a loved one navigating ALS. The information posted in Facebook groups does not represent the views of I AM ALS and has not been verified by us. Please discuss questions and decisions related to your diagnosis and medical care with your health care team.

Support for People Living with ALS
Caregiver Support
  • ALS Caregivers is a group where family and friend caregivers for people with ALS to share ideas, resources and contacts.
  • ALS Spouse Caregivers Support Group is a group specifically created for caregivers whose spouses only (whether legally married or not) havve been diagnosed withh ALS.
  • ALS FTD Caregiver Support Group is a group for anyone who is currently caring for someone with both FTD and ALS and anyonw who has cared for a loved one with FTD and ALS in the past.
  • Still Standing is dedicated to people who have lost a loved one to ALS.
  • Sarah’s Caregiver Community is a group to support, encourage and share resources for caregivers.
  • CALS Widows is a private place for widows and widowers t0 share their unique journeys of living after losing their spouses to ALS.
Women Diagnosed with ALS
  • ALS Forum for Women (Lou Gehrig’s Disease) is a group only for women who have been diagnosed with ALS and women who have a loved one that already has been diagnosed.
  • Her ALS Story is a group for women who were diagnosed with ALS at a young age and want to join the advocacy fight against ALS.
Familial ALS
Clinical Trials/Treatments
  • ALS Clinical Trials and Research is a group to understand the processes that lead to drug approval, share info about upcoming clinical trials and share evidence-based information and research papers about ALS.
  • ALS Radicava User Group is an ALS community-run group to discuss the recently approved drug for ALS, Radicava, (Edaravone).
  • BrainStorm Trial Participants and Families is a group created for a private, safe place where trial participants and their families can discuss things relating to BrainStorm.
  • Pills for PALS is a group to learn about and share supplements for people living with ALS and other healthy discussions.
  • Pot for PALS is a group sharing information about medical marijuana (MMJ) for people with ALS.
  • ALS Naturally is a group for people living with ALS and their caregivers who believe that ALS can be stopped and revered using testing, natural supplements, treatments, prayer, and techniques.
  • ALS – Equipment Exchange is a portal for ALS-related patients/individuals/families to post about the equipment they would like to donate, sell or post requests for equipment.
  • ALS Preferred Equipment is a group where ALS caregivers or people living with ALS can post equipment or ideas that have helped them.
  • ALS Trach and Vent Support is a group for people living with ALS who are trached/vented and their caregivers.
  • ALS Equipment Donations is a group for people who have equipment that would like to donate it to people with ALS.
  • Ask Me, I’m an AAC User! is a group where AAC (augmentive and alternative communication) users are the authority on AAC and here AAC users, SLPs, support staff, doctors, parents, family, and others who are interested in AAC can ask questions and get advice and some insight from actual AAC users.
  • Part-Time Wheelchair Support Group is a discussion, support, and information/resource network for those of us who are required to use wheelchairs, scooters, walkers, walking sticks, crutches etc. on a part-time basis.
  • Wheelchair and Mobility Aid Users Group is open to all wheelchair users, mobility aid users as well as caretakers and family members of those who use wheelchair and/or mobility aids.
  • Tobii Dynavox Community is the place to look for support, crowd source your questions and connect with others in the AAC and assistive technology community. This group is moderated by the Tobii Dynavox Community Team.
  • Smart Box Community is a place for our users, their families and professionals to share ideas, ask questions and chat with members of the Smartbox team.
  • Traveling with ALS is a group to help ALS patients and their families find information about traveling with ALS.
  • Feeding Tube Families is for caregivers of children or adults with feeding tubes. This could be parents, grandparents, aunts, uncles, and family members that are involved in DIRECT care, etc.
  • Feeding Tube Support & Friends is for Feeding Tube users and their caregivers. Please feel free to share your trials & tribulations, ask questions, and offer advice and support to others.
  • PEG Tube User Group was established by Keith Yaxley for PEG tube users, their families, friends and caregivers to share experiences, information and concerns.
  • Adults with Feeding Tubes Support Group is for adults living with conditions that require enteral or parenteral nutrition. All tubies are welcome – NG/NJ/PEG/PEGJ/J/TPN.
Trach Groups
Work/Personal Life
Related Diseases
General Support for Anyone Impacted by ALS

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Have questions? Call us at 866.942.6257 between 9 a.m. - 5 p.m. or email us

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